Social Icons

Breadcrumb

Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2007-2019 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens, and other topics of interest.

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. (In some cases the state legislature has enacted multiple bills pertaining to one topic area. As a result, a database search may yield several statute entries for one state on a particular topic.)

Note that the database does not contain information about state regulations. Some states have developed regulations concerning genetic nondiscrimination in employment and insurance, health insurance coverage, genetic privacy, research and the use of residual newborn screening specimens. To search regulations in a particular state, visit the Cornell Legal Information Institute, click on the name of the state, and scroll down to the regulations link.

Search Tips

You may select one or more from each box; hold down your "Ctrl" key and click to select multiple.

Selecting all the choices inside any one box will, by default, return every record in the database.

The keyword search, by default, combines with all other selections and may result in too narrow a filter. If searching by keywords, it is best not to select from any other boxes at first, then progressively narrow down your result if necessary.

Please contact us if you have any questions, comments or suggestions regarding our database!

This bill creates the Genetic Information Privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

Prohibits state agencies, district boards of education, or pre K-12 educational institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits information about the student or the student's family concerning biometric records, which is defined to include DNA sequences. Died.

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Health benefit plans, including the Alabama Medicaid Agency, may not require a genetic test to determine if a person has a predisposition to cancer as a condition of insurability or use the results of such a test to determine insurability or discriminate with respect to rates or benefits. The statutes set forth penalties for insurance companies or health maintenance organizations that violate the law.

This bill requires health care insurers in the individual market to comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-53. Health care insurers in the group market must comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91. Signed into law August 5, 2009.

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

Health care insurers in the group market may not establish rules for eligibility or continued eligibility based on genetic information or impose preexisting condition exclusions based on genetic information in the absence of a diagnosis.

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

This bill amends existing law that prohibits health benefit plans from terminating coverage based on a health status-related factor, including genetic information, by adding a group disability policy or a certificate of insurance for a group disability policy that is not issued in the state of Arizona to the definition of "health benefit plan." Signed by the Governor on April 28, 2008.

This bill prohibits health care service organizations from imposing pre-existing condition limitations or exclusions. Genetic conditions in the absence of a diagnosis related to the condition are not considered pre-existing conditions and may not result in a pre-existing condition limitation or exclusion. Measure failed.

The bill establishes the right of parents to consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as for newborn screening. Signed by the Governor May 10, 2010.

This bill amends state law pertaining to genetic testing. New provisions include that a person may not order a genetic test without the informed consent of the person being tested. Signed by the Governor on 3/17/2016. Effective August 6, 2016.

Prohibits schools and school service providers from collecting or possessing biometric information of elementary or secondary school students unless the school service provider: (1) develops a written policy for the collection, retention, disclosure and destruction of biometric information; and (2) obtains a written release to collect biometric information. Sets forth protections for biometric information, if collected. Biometric information is defined as information derived from any biometric identifier used to identify an individual. Died.

Allows the release of genetic testing and information derived from genetic testing to the following, if the necessary requirements are met: an individual or entity that provides services to a health care provider or clinical laboratory, a statewide health information exchange, the health insurance carrier of the person tested, a nationally recognized accreditation organization, a health professional licensing board in the state, and an entity that is responsible for the payment of a health care provider charges. Died.

This bill specifically excludes direct-to-consumer genetic tests from the definition of genetic test under the existing state privacy law. The bill also amends the provision of the law pertaining to disclosure of information derived from genetic testing to health care providers and others. House second reading on 3/13/2019.

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.